Plain English Summary

In the UK, there are many new policies and services which aim to relieve suffering and improve quality of life for patients at the end of life. How should the NHS decide which ones to introduce and the overall level investment in palliative care services? In principle, the NHS should fund palliative care that gives the greatest benefit to patients during their limited life expectancy, for the least cost, and it should be clear to the public the funds could not been better spent elsewhere in the NHS system. It is difficult to know if this is the case in palliative care because the ‘conventional framework’ for considering the benefit of healthcare interventions has limited relevance. This is because the focus switches from life-prolonging or curative treatment to comfort care (which is care that aims to improve quality of life for both the patient and the family, but which may or may not improve the health of the patient). As the NHS is run along principles of improving population health, this makes it difficult to assess whether any decision for investment in palliative care is defensible from the perspective of it being a fair use of the limited resources available to NHS. 

Palliative care interventions compete for the same healthcare funding as other services. Therefore, it had been argued that we must measure the benefits of palliative care in broadly the same way that we would any other NHS service, which means looking at whether it has improved survival and/or restored bodily and mental health. It has also been argued that this would be entirely inappropriate because it neglects unique and sometimes complex benefits generated from palliative care. These may include support of patient dignity, patient autonomy, and the social, spiritual, and religious aspects of care. In their view, comparing palliative care to other NHS services would be like comparing ‘apples with pears’.  

We will do a literature review on the methods researchers have taken to establish the benefits of palliative and end of life care. This will involve reading all UK academic research that has considered whether it is worth investing public funds in a palliative care service. We want to understand if the researchers followed the ‘conventional framework’ of considering the service benefits to be from improved survival and bodily health, or if they have taken a different approach.  To do this we will look at how the benefits of palliative care were measured, in what circumstances, what justifications the researchers gave for the way they measured its benefits and how well did their research go for them (e.g., did they encounter any problems).